Tag Archives | communication

Autistics Speaking Day – November 1, 2011

By on November 1, 2011 in Autism

Today is “Autistics Speaking Day“, in place of what might have been the second “Communication Shutdown Day”. Sound like quite the conflicting sort of turn of events?

Last year, a group out of Australia started “Communication Shutdown Day” on November 1st where neurotypical people (those without Autism) were to sign off from Facebook, Twitter and other social sites in an effort to better understand what it is like to be non-communicative, or unheard or… well, autistic.

With all the best intentions in the world, this idea made very little sense to most people since shutting down in order to speak out was a bit of an oxymoron and also, social sites were proving to be the first real way in which Autistics could finally have a voice in the first place.

I wrote a piece last year about why I won’t be shutting down for November 1st, as did many others.. and so, it would seem, no real effort was made to continue to the project on for a second year.

ASDayBy Autistics, For Autistics

What did come of the shutdown day project, however, was a whole new day in which, autistics do the opposite of shutdown… they speak out. A day in which autistics share their struggles, celebrations, strengths, weaknesses and experiences in general with as many people that will listen.

That’s a much better use of a day, if you ask me. In fact, that would be a much better use of every day. But obviously, trying to give every day a name is a little tougher than you’d think.

Still though, a day where autistics can share with the world is a great start and far better than asking others to stop talking…. or is it?

Contradiction or merging of ideas?

Still though, when I stop and think about it… is it really that much of a contrast?

The shutdown day project asked that non-autistics stop visiting their social networks and to go silent… which all by itself really is a dumb thing to do.

However, in conjunction with “Autistics Speaking Day”… it’s starting to actually make a lot more sense to me.

If autistics can have a day where they can speak their mind, tell their tales, share their experiences and speak their mind… free of judgments or criticisms from others… well, the whole thing starts to make a lot more sense.

Maybe if “shutdown” was changed to “shut up and listen”, then the two days truly would be the same thing, rather than opposites. Instead of abandoning social networks, if we were encouraged to seek out social networks and find as many autistics as we can that are sharing something today and just listened rather than putting in our own 2 cents…. maybe November 1st really wouldn’t be all that different from what it was originally supposed to be… maybe it’s just an extension of it.

Perhaps if autistics make an extra, and sometimes difficult, effort to open themselves up to the world and share their experiences and thoughts on Autism, and everyone else made an effort to set aside an hour or two to seek those autistics out, and really just listened, we would finally have a day that made perfect sense.

So, if you have Autism, I encourage you to take part in “Autistics Speaking Day” today, November 1st.

And if you do not have Autism, I encourage you to seek out some autistics on Twitter, Facebook or even in good ole Google search and spend a little time reading today.

The more that is shared and the more people listen, the greater the opportunity for understanding and acceptance for all people with Autism.

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Breaking the Autism barriers with technology, but who’s barriers are they?

By on October 27, 2011 in Autism

There has been a lot of talk lately about iPads and, to a lesser extend, some other technology that has been vastly improving the treatment methods of autistics all around the world.

Yes, autistics are finding a way to communicate using an iPad. Thanks to the hard work of some very amazing developers, a child, teen or adult with Autism can move a finger around and select emotions, objects, words or even letters on an iPad and express themselves… even though no previous method had worked for that person before.

Most people see this as a means for autistics to “come out of their shell” or to “break through the barriers of Autism”… for me, I see it as a way for us to break through our own barriers.

Intellectual Equivalent

If you’re familiar with Autism at all, I’m sure you’re familiar with the term “intellectual equivalent.” It’s used to describe the maturity level of a person that is not at the maturity level that they should be for their age.

For example, a 30 year old man that is unable to speak, use a toilet or dress himself may be considered to have the “intellectual equivalent” of a toddler.

The problem with this is that it was generally assumed that these people had very low IQ scores to also indicate this lack of intellect.

A child, that was featured in the CBS show 60 Minutes, is actually pretty smart and actually likes classical music and opera. The thing is, no one knew it.

It wasn’t until the child was able to use an iPad that they began to realize just how much he knew… and discovered his love for music.

barrierWho’s barriers are being broken?

Is it really that child that’s breaking through his barriers? Or is he still the same child that he’s always been?

Some would say that he is, because he’s now able to communicate the things he knows and his taste in music… however, I’d argue that it’s more a case of us being able to break through our barriers.

He’s always liked opera, he’s known what a saxophone is before he used the iPad.

You see, up until now, we’ve had no way to ask the question and get a response. That’s on us, not that child. We’ve banged our heads on the wall over and over again trying to find ways to get input and output on a level that, not only could he use, but so could we.

The iPad provides that interface, not just for those autistics to communicate but for us to change the way we think.

Changing the way we think

Not only are we now able to ask in a way that many autistics can understand and get a response in a way that many autistics can make us understand… but it’s changing everything we know about “intellectual equivalent” measurements.

This child is clearly not a toddler. Not in his actual age nor in his “intellectual equivalence.” Toddlers do not know what a saxophone is.. much less view opera music as a reward. This child does.

The segment does not state what his IQ test score results would be, if they did one, but I’m fairly certain that what ever it was, is not reflective of just how much he’s able to indicate that he knows via the iPad. Do toddler level IQ scores allow a person to identify a saxophone on a screen?

Something to think about

It’s human nature to speak about a person as if they’re not even there, when it appears as though they’re not hearing what we say. Maybe not right away and certainly not intentionally, but people do it none-the-less.

The thing is, as was always suspected by some people, these children truly are taking it all in. They see it, they hear it and they feel it.

So swear words, abuse, insults, derogatory statements… all kinds of hateful and hurtful things can be taken in by these children that you may think aren’t absorbing anything at all.

Likewise, they will also be learning as you read to them, learning as you speak to them, feeling as you love them and taking in all that happens around them.

And it may be years, it may be never… but maybe, just maybe, someone will hand your child a piece of technology or an app that helps you to break through your communication barrier and your child will astound you.

So even if a doctor uses the “severe” word, even if your child scores low on an IQ test… and even if someone tells you that your child has the “intellectual equivalent” of a child or toddler… remember, those are just barriers. Once you find a way through, you may be quite surprised at what you find out.

 

For more on the CBS show 60 Minutes segment on Autism Apps:  http://www.cbsnews.com/video/watch/?id=7385686n

If you have some ideas or would like to get involved in being able to make Autism Apps: http://hackingautism.org/

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If you can’t say something nice…

By on October 13, 2011 in Autism

I know, my mom was the only mom to ever use that expression, right?  No?

I think it’s one of, if not the, first lesson most of us can remember having learned… because right around the time we start retaining memories for later is about the same time that we learn to just say what ever is on our mind.

Before kids learn to lie, they learn to be honest… brutally honest. If your ass looks fat in those jeans, your little one will tell you about it.

I bet my mom never imagined it would be like this

So now I’m a grown up, I have children of my own and I get to sling the old cliché’d lessons around too… but it’s not the same for me. As the parent of an autistic child, I have a better chance of teaching this lesson to my 3 year old than I do my 6 year old son with Autism.

Autism is classified as a social impairment and a lack of fundamental understandings in communication… more to the point, autistics have a hard time maintaining friendships, relationships and even simple conversations.

One of the reasons for this is that people in society aren’t very good at accepting brutal honesty. To most people, an insult is an insult… whether it’s true or not. If you call an ugly person ugly… you’re insulting them.

Why? Because of generations and generations of people saying “If you can’t say something nice, don’t say anything at all.” Would we still take offense to brutal honesty if people didn’t say that? Probably. Still though, when you think about it… it’s actually rather silly.

Essentially people have become so insecure that hearing a negative, even when true, is an insult. And so we teach people not to say anything unless they have something nice to say.

Autism – “don’t say anything at all”

Now I’m presented with two problems that my own mother never had to deal with…

  1. People, especially children, with Autism are already less likely to say anything at all. Either from being non-verbal to begin with or being socially unable, either via anxiety or fear or what have you. So telling an autistic child not to say anything at all becomes very counter productive.
  2. People, again, especially children, with Autism are very much inclined to say what they believe to be true, whether nice or not. Lacking social aptitude as well as having a lack of understanding how and what other people think, they don’t tend to take into consideration how what they say will affect others.

So not only does this expression discourage my son from speaking but it also puts a very heavy weight on him as he will either never know, or never know with any certainty, if what he is about to say is something nice or not.

First, I encourage him to tell the truth and not lie… then I have to tell him not to tell the truth when it’s not nice. This is a lot for any child to deal with, so how well is it going to be taken by a child that is unable to comprehend what others may or may not be thinking.

What to do?

if you dont have anything nice to sayWell, I can’t really go around society convincing people to just be more secure with themselves and accept a little honest criticism sometimes… I’m pretty sure even I can’t live up to that expectation all the time…. although it is a nice thought.

Do I tell my son the same old cliché in hopes that he can figure it out and make the most of it? Do I hope that it doesn’t only complicate matters for him?

Ultimately, this comes down to the age old debate that sometimes still causes arguments among parents of autistic children… do I help my child to conform and be a part of society or do I allow him to be his own person, which in all likelihood will make him a better person but also cause a lot of problems for him down the road?

The problem is, there is no one right or wrong answer and certainly not an easy one.

The best that I can do, for me, I think, is to convey the message but abandon the cliché. It’s true, I need for him to understand when to speak up and when not to, to consider the thoughts and feelings of others but it’s also true that I can’t put the same kinds of expectations on him that my mother put on me.

In other words, I can’t just cliché him to death and expect him to get it.

In the television show Parenthood, Max (child with Autism) tells a former alcoholic that he shouldn’t go to a party because he’s an alcoholic… Max’s sister is quick to respond, as though Max shouldn’t be rude, but the former alcoholic says “it’s ok, he’s just looking out for me. I should be as honest with myself as he is.” and realizes that Max is right.

A part of me never wants to squash that in my son. There’s something there to be admired.

It’s a delicate balance I think… not an all or nothing system. Which just makes it all that much more difficult. I don’t want my son to never speak up for fear of not being nice but I also don’t want him unintentionally offending everyone he meets.

Unfortunately, you won’t get any solid answers from me on this one… this is a life long lesson that even the best of us sometimes still wrong.

Like many things, this is going to be a process… one that will hopefully help him to understand society and his place in it as well as to help me learn some new things along the way as well.

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When apples talk to oranges about steak

By on September 26, 2011 in Autism

I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.

I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.

How this all started

Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.

In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.

Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.

But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.

He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.

Apple, meet orange… begin discussion about steak.

Where does this discussion lead?

Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.

However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.

As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.

A woman replied to me, this is what she wrote:

Me: Autistic parent of an autistic child
I’ll comment on this tomorrow

Person without a disability
Why can’t you just come out and say it?

I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.

Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?

What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.

Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?

Communities?

Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.

What does this all mean?

As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.

We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.

You might as well get money management advice from a random homeless person.

Steak

The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.

There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.

And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.

Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.

We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…

So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.

Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.

In fact, maybe they’re not so different after all.

I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.

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Who has a right to talk about Autism?

By on September 17, 2011 in Autism

Recently, Rob from Lost and Tired wrote a blog post called “We’re on the same team….right?” which, the title pretty much speaks for itself. And I’ve often written about how it seems that no matter what you say, someone will object to it. Someone will be offended and someone will hate you for it.

Sadly, that’s just the reality of putting yourself out there. People have differing opinions, and the more readers you get, the more likely you are to find them.

However, more and more recently, I’ve been encountering people with Autism that feel that no one has a right to even mention Autism without having Autism themselves.

Who has right to talk about Autism?

no voiceIn the post I mentioned, one person commented, basically stating that if you don’t have Autism, you can’t talk about it. If you went to check it out, you saw my reply, which wasn’t very professional but as I wrote and wrote, I quickly realized that I couldn’t possibly fit all of my thoughts into one comment on a blog post.

The comment in question is this:

i have the exact same issue – to me – people who DO NOT have autism have absolutely NO RIGHT to OPEN THEIR MOUTH because they do not have it themselves – and do not know crap about what it is like to have the condition, the social rejection of it, and so much more that it makes my head spin. i have the exact same issue with people who go to college to teach special needs / special ed when they ARE NOT special needs themselves !!!

I don’t know if he was being serious or referring to how some people have been in the past, but I have encountered this sort of thing enough myself. So either way, I thought I’d write about it here.

While I do understand the sentiment, I do understand where this person is coming from, I also can’t help but think that this is extremely counter productive, hypocritical and even rude in a way. Now don’t take the last few parts and skip the rest, as I said.. I do understand where he is coming from and why he’d say it. I just want to be able to explain why that’s not a healthy stance to take.

Parents

First of all, to tell parents that they can’t speak for their children is likely to get you into a lot of trouble. Parents are very protective of their children, it’s an animal kingdom thing, it’s instinctual and no one had better tell a parent that they have no right to speak up or protect their child.

I want for my child to not be bullied, I want for people to accept my child for who he is, I want for my child to have a fair chance in school, work and life in general… I want the best possible life for my child.

To tell me that I can’t try to speak up for that, simply because he has Autism and I don’t, is a bit rude.

Am I to sit on my butt, let him be bullied at school, learn nothing and have no help…. and just hope for the best? Because I have no right to speak up?

Understanding and Acceptance

The whole goal of raising awareness is such that people that know nothing about Autism can not only understand it, but also come to accept the people that have it. Meaning more jobs, better services, less judgments.

But how can people be expected to do that if they have no right to ever discuss it? How can there ever be an understanding? If only autistics can understand it, then there’s no point in explaining it or raising awareness of it and if there’s no point in that, then there will never be acceptance.

True, most people will never truly understand and it’s also true that most people will never fully accept it… but is that really what is needed? Or is it good enough that people understand it enough to be more accepting, enough to stop judging those that are different… enough to stop bullying or denying them based on what they don’t have and may never fully understand?

No thanks, I don’t need your army to win the war

While I do rather hate the war analogy that some people make in reference to Autism (usually in reference to pharma companies), but in this case, I think it fits… in the war on awareness, understanding and acceptance.

I mean, think about it. At 1 in 110 (or so, depending on where you are), you have a relatively small portion of the population fighting for services, acceptance and a fair chance getting what others take for granted, such as less judgments, struggles, bullying and so forth.

But if you could recruit your parents, grandparents, other loved ones, friends, family, charities, teachers and others to help you, to fight with you…. wouldn’t you want that? In fact, wouldn’t that be exactly what it is that you’re fighting for?

Not for them to necessarily understand “exactly” what you’re going through but to support you, to back you up and to speak up to reach all of the people that you can’t reach yourself?

Neurodiversity

One time, a person with Autism suggested (more or less inquired really) if it would be a good idea to have two groups, one with Autism being self advocates and one for others, such as parents. Which, on the surface makes some sense as people with Autism feel as though they’re foreigners to us and we can’t possibly understand exactly what it means to have Autism….  however, I feel that it kind of defeats the purpose of neurodiversity.

The whole point is, I think, to bring different people, who think diffrently, together and be considered equals with differences. That we accept each other, without judgment, that neither is superior, neither is inferior… we’re simply the same but different, if that makes any sense.

So to split us up based on our differences, in an effort to unite us… seems counter productive.

Awareness for all

To achieve the goal of learning about Autism, in understanding how it affects people (quite differently I might add), how to reduce the bullying, judgments and struggles of people with Autism… we must all speak out.

Positive, supportive and unified. Working together toward a common goal.

If you have Autism, you have to remember… that special ed teacher that speaks up, that parent that fights for services, that charity that raises money… it’s for you. It may be misguided sometimes, it may be without a complete understanding and it may even be wrong in some cases, but it’s the best they can do, for you and for all with Autism… especially their loved ones.

We all have a right to want what is best for the ones we love. We all have a right to wish for less hunger, less war, less racism and all of the things that we, as humans should be over by now. That includes discrimination towards people with special needs.

Whether we are in war, starving or are disabled ourselves… we all have a right to speak, because if we don’t, we are nothing.

What I’m trying to say is…

While I do believe that we all have the right to fight for what we believe in, especially when loved ones are involved, what I’m really trying to say is…. please don’t shut us out.

Please let us help. Yes, we’ll falter along the way… we’re not perfect and, as is abundantly clear, we can’t possibly know what it’s truly like.. however, as parents and loved ones, we’re the closest thing you have for bridging the gap between two groups that really never should have been separate groups in the first place.

Don’t ask us to hope that our children will one day be able, willing and strong enough to fight for acceptance. It’s our greatest wish that one day, they will… but we can’t possibly put that burden on them… especially if we spend our time together on the sidelines. If we are unable to speak, that is what our children will learn from us. If we are unable to stand up for what we believe in, we can’t possibly force that responsibility on our children.

Autism is your world. My child is my world.. and my child has Autism.

Let us help our children. Let us help you. And forgive us our mistakes.

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